What were your first symptoms of endometriosis?

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The first signs and symptoms of endometriosis aren’t always easy to identify, and they can vary significantly depending on the disease’s location and severity. Some can experience severe symptoms, while others do not exhibit any noticeable symptoms until later in life. The common initial signs and symptoms of endometriosis are severe, debilitating abdominal cramps; pelvic pain; painful periods; long heavy periods; nausea and/or vomiting, painful sex; painful bowel movement and urination; infertility; and chronic fatigue.

Most of these symptoms are common with other diseases, which makes a great reason for confusion and delayed diagnosis of endometriosis. But we need to ensure that someone with any symptoms related to endometriosis knows about this disease and can advocate for themselves.

What were the initial problems that led you to a diagnosis of endometriosis?

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Painful periods. Unfortunately, I could not recognise it as a symptom of endo. I had extremely regular periods all my life. Never missed a single one, absolutely no heavy flow too, but, they always were painful. I was told this pain is normal and periods have never been painless for anyone. It is not supposed to be easy. At times doctors thought I was exaggerating the pain and if my periods were on time there was nothing to be concerned or worried about. If only any of the doctors would have actually dug deeper, I would have had a diagnosis probably 5/6 yrs earlier when my endo was at a lower stage vs now when at stage 4, I had to undergo a 7 hr surgery with complications. I wish period pain was not normalised as it has been in today’s society. I am now very vocal about it and approach the topic within my family and friends. It also lead to one friend being diagnosed recently and thanks to Icarebetter and Nancys Nook she is in good hands for her treatment.

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Feeling like I had a UTI, having to urinate about 20-30 times a day, rectal pressure like a feeling of having hemorrhoids maybe, left sided pulling at the ovary level.

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Mine started with very heavy periods, to point my fatigue was crippling (age 13), which I would venture to guess is not normal for a young athletic teen. I was bedridden during the first few days of my period. Morphed into painful periods that needed a significant amount of ibuprofen to “function”. My mom was very strict so, I was never allowed to stay home because of period pain. Finally went to see a gyno at 15 yo when my school sent me home while on my period. Put on birth control that made my periods nearly go away. I didn’t know any better, but as a teen I began to suspect endo when I was still taking more ibuprofen than I should while barely having a period. It became pretty undeniable after I had to switch and stop birth control for a number of reasons. My pain changed to pain only during my period to include days after my period and several days before. My breaking point for seeking out expert excision was when I was in pain every single day of the month and barely functioning. Endo wrecked my life in so many ways. Find people who will support you no matter what – friends, family, co workers. Getting the surgery I needed would have been impossible without them.

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